Sara Taylor has cancer.
"It's a pernicious little bugger," says her father Lee. "One of the worst you can get. If there were any justice or order in the world, she'd get better."
Sara is an actor, a rancher, a singer, a world traveller, a wife, sister and friend. And a Star Wars fan. Trash-talk Phantom Menace at your peril around this woman.
The 25-year-old put all of that to use after her diagnosis two years ago, eventually deciding that she wanted to make a TV documentary about her experiences.
Sara's husband Brad Gibson and her mother Pat are at the door of the ground-level Fairview Slopes condo the morning we meet. Brad is big-shouldered, bearded and quiet. Pat's smile and voice take in a whole room.
"For 18 months, we were focussed on getting her better," says Pat. "Now we're living with it."
Sara strides in, a lithe, graceful presence in Roots hat, jeans and checked shirt. Pale but animated, she keeps talking as she sits at the kitchen table to sort through the half-dozen naturopathic supplemements she downs every day.
She originally got together with Vancouver producers Shel Piercy and Pat O'Brien to make a documentary about beating cancer. Last year she was in remission, she got married - cue the perfect storybook ending. Then the cancer came back, and Sara says she made the decision to keep filming. "My oncologist said when we were filming that not everybody gets to be in remission, and that nobody wants to tell the other story," says Sara, squeezing dark liquid from an eye-dropper. "Well now I'm not in remission. We have this idea that if you can't be cured of cancer then you die of cancer."
She could live for several years. "It changes all the time. Every day I evolve through this experience."
When she was first diagnosed, she looked for books to help her deal with it and found advice aimed at people in their 30s or older. "There was nothing about dealing with knowing that none of your dreams will ever happen," she says, telling of a friend who recently moved to Vancouver, all caught up in making a home, buying furniture, getting a job. "She's tasting the possibilities," says Sara. "I was jealous. I still have dreams of the future, but it's not the same as when I had time forever."
Piercy and O'Brien are screening a rough cut of Sara's Story in their Yaletown offices. The hour-long documentary follows Sara and her family through the past two years. She's shown exhausted, gaunt and bald in hospital after near-lethal chemotherapy. At other points there's no question of Sara's power and presence as a performer, especially the scenes showing her singing and acting in Barkerville, the restored 1870s gold rush town. She performed there this summer in period costume, a curly wig covering hair thinned by chemotherapy. The video also shows her hosting a segment of the February 1998 Variety Club telethon, where she first got to know O'Brien and Piercy.
Long-time friends of Sara's theatre family, they met Sara when, in the midst of chemotherapy, she decided it might be useful to staff a phone line on the telethon.
"Her mother told me she had this rare form of cancer," Piercy recalls. "Sara was so articulate and poised, I thought we had to have her host a segment of the show."
The plan to do a documentary grew from that. They shot footage over a year in her life, ending in October 1998. The producers had gone on to other projects when they got another call last April from Sara's mother, saying the cancer had come back.
"Then we started shooting again," Piercy says. They needed the money that would come with a guaranteed broadcast deal, and met with executives from Global TV that May. The network wouldn't promise anything, but changed their minds when Sara attended the pitch meeting at Monk McQueen's restaurant.
"She charmed 'em," says O'Brien.
"She talks frankly about cancer and dying,:" says Piercy. "She took her naturopathic supplements, which takes like 20 minutes, and kept talking throughout."
The network types put up the money. The documentary, to be shown on Global in March, is being sold overseas as well. Piercy has one other story, from several days of filming last September at the Taylor family ranch in the remote Chilcotin. Sara was riding a horse for the camera, when the animal's hips shifted and threw her. She suffered a concussion, and as the crew debated whether to call an air ambulance, it came out that days earlier Sara and her sister had walked away after rolling a car on one of the mountain roads. Then Sara, in bed with an icepack on her head, piped up: "Just because I'm dying doesn't mean accidents won't happen." She toughed it out without an ambulance.
From the website that Sara and Brad maintain as an information service for those with her rare form of cancer, Desmoplastic Small Round Blue Cell Tumour:
n mainly appears in young people (mostly men) n is quite responsive to chemotherapy
n can go into peritoneum, liver and lymph-nodes n can "seed" itself in more than one place n treatment can not guarantee that it will go away forever n Sara's Vancouver oncologist Dr. Meg Knowling has treated three people already with the cancer. In all of North America there have been probably only a few dozen cases since 1986.
"Sara has a great oncologist who demands the best, pushes treatments," says Brad, who maintains the website. "She'll step on toes if need be. If you get her as an oncologist, it's terrible, because she deals with the worst cancers."
Sara's morning starts out with a visit to her naturopath, Dr. Jim Chan. "It gives me the feeling I'm still doing something," she says. "Dr. Chan's got people who were cured, but he doesn't parade them, he doesn't make promises."
Treatments cost up to $6,000 a month and aren't covered by medical insurance. Her extended family is helping her pay for them. Sara is hooked up to an IV that doses her with hydrogen peroxide for 90 minutes. The attendant seeks a vein strong enough for the IV, finally settling on one in Sara's foot. Brad brings a hot-water bottle while mom Pat rubs the bare foot, and Sara tells of her childhood. Pat and Lee Taylor met when Lee came to Vancouver to avoid the Vietman draft. They eventually got into tree-farming, theatre in Barkerville (they run the shows there all summer), and cattle ranching in the Chilcotin. They moved with Sara and two-years-older sibling Jenny up to the ranch when Sara was five. It was an eight-hour trip to the ranch by horse and wagon from Anahim Lake. Now that a logging company has pushed a road through, it's a one and a half hour drive via four-by-four. The ranch is still a good day's drive, it would seem, from the nearest carcinogen.
The girls enjoyed a life of no TV, outdoor privies, home schooling and making up their own games and stories. Their nearest neighbours were about three kilometres down the valley. Sara has decided she wants her ashes scattered on a hill above the ranch.
When Sara was eight, each girl got a pony, and Sara's was named Gypsy.
Sara watches the IV drip going into her foot. She doesn't speak for a moment.
"When I was 10 it was a beautiful day, my sister and I were playing
. . . My dad came and said Gypsy had broken her leg, she had to be shot."
They were farm girls, they didn't argue. "I knew what had to happen,
I didn't want her to suffer. I went and hid in my room, so I wouldn't hear
the gunshot. I got out every picture I'd ever drawn of her, every stuffed
animal I'd ever named after her, put them all over my bed, and I cried and
cried."
She rubs her cheeks and swallows. "It's ironic now, because we've talked about assisted suicide . . . We call it 'putting animals down,' but really we kill them."
She has no hesitation continuing that thought. "When is it too much suffering for a human being? What if through the process of this cancer my bowels are blocked so I can't eat? What if I am so dazed by morphine for pain that I'm not there? I don't think I'd like that."
She laughs softly, and pulls a blanket around her shoulders. She's been told that she might die of liver failure. "You get weaker and weaker, and then you die. That would be okay. But maybe when I get to that point, I'll feel different."
A CT scan in November showed a tumour on her liver "At first I was upset, that it was on a major organ.. Then I'm thinking I'm glad it's on my liver. It was a shock, I was thinking about which way I'd rather die, let's go with that over bowel obstruction."
As a teenager, Sara ran the front of the house in the family's Barkerville theatre during the summer tourist season. She studied acting at Vancouver's Lord Byng secondary, and attended the University of Victoria's fine arts program.
She joined the show alongside her mother and father, who still keeps his 1960s-era blond pony tail. The performance spills out of the theatre and onto the Barkerville streets, where a shaggy actor named Brad Gibson got work one summer.
On the drive to an afternoon radiation treatment appointment at Vancouver's cancer clinic, Sara talks about that summer day. "Jenny and I came back to Barkerville from a seven-week back-packing trip to Europe the year I was 19, and Dad introduced us to the actors. I saw this guy with a big beard, just the opposite of what a teenaged girl is supposed to go for, and I just knew."
Brad was 27 at the time, and Sara was the 19-year-old daughter of his boss. "It took five months before I got him to want to be my boyfriend." Then followed a long-distance romance while Sara was at university, and summers together in Wells, the town closest to the Barkerville historical site, where they performed together.
On Oct 10, 1997, Sara was diagnosed with cancer. Six months of treatment followed and by the next year she was in remission. They were married Oct. 10, 1998, to take that date back for themselves. They rented a waterfront mansion on Vancouver and invited over 100 guests. They bought a condo just several blocks from the cancer clinic, and Sara thought she might walk up and volunteer there sometime. The following April, she got the news that her cancer had come back again.
Going up in the cancer clinic's elevator, Sara leans against the wall as her mother rubs her shoulder.
"You okay?" Pat says, looking into her eyes. Sara nods, clearly tired.
"Yeah I'm fine," she says, swigging from an ever-present water
bottle. A sign at reception informs patients that radiation appointments
are running about 30 minutes behind. The gleaming equipment is double-booked
because of high demand.
There are nervous, fearful faces among those waiting, and no amount of Christmas tinsel on the walls or Santa hats on the staff can take that fear away. But Sara, Brad and Pat have flashes of humour, jokes, even laughter. Sara says the worst times have already come. That was the chemotherapy through the fall of 1997 and into the winter of 1998, the cure that left her sterile, sick for months and felt worse than the disease. "I thought I'd rather die than do this," she says. Part of it was not knowing whether this would be a cure, or whether there would simply be more and more of the same. She was prescribed anti-depressants, but stopped taking them because she didn't like the way they made her feel. "I decided the only way to survive chemo was to embrace it, to accept it," Sara says. Friends sat by her bed with guitars. "I sang Christmas carols through everything."
Wracked by vomiting from post-chemo nausea, she would make a point of thanking the nurse who brought the basin she threw up in. All visible cancer was removed surgically. A final huge dose of chemo and radiation in March of 1998 was followed by a stem-cell transplant, wherein cells that were earlier harvested from her bloodstream were reintroduced to her body to rebuild bone marrow. She was 20 days in quarantine, and spent summer 1998 recovering.
The cancer came back in spring 1999, but Sara still felt well enough to go back to work that summer. She went back to Barkerville, and donned a wig and her period clothes.
"It was such a relief to get back," she says. Her one concession to the cancer was that by summer's end, she was performing four days a week, instead of five.
They came back to Vancouver this fall for naturopathic treatments, and doctors later recommended radiation to shrink her tumours. Radiation therapist Richard Kubisch takes her to the machine called a linear accelerator.
Sara settles onto a cold metal table that will rise up and back into the machine. A tumour on her hip makes lying down painful. Sharp green grids of light play across her belly, and are aligned with pre-drawn ink marks for accuracy.
Soft music plays as Kubisch quickly sets her up. She's alone for a second with a flash of radiation. It's the third dose, and she'll get a total of 17 over four weeks.
After that, she wants to get back to the life she knows, performing again in Barkerville next summer.
About that Star Wars thing. She's a big fan from way back. Getting through cancer treatment involves a series of small goals, and one of Sara's while getting chemotherapy in the winter of 1998 was to see the Phantom Menace. Later, at her wedding, she marched up the aisle to the procession theme from the first Star Wars movie. She's laughing now, knowing how geeky that sounds. But when it came time to endure chemotherapy, Sara recalls thinking: "If I could become a Jedi and still my mind . . ."
More than a year after chemo, in May 1999, Sara and some actor pals piled into her car for the drive from Wells to a theatre in Quesnel for a screening of The Phantom Menace. Some passengers started into some disparaging, it's-just-a-movie talk and Sara pulled over. "I said 'anybody who disses Star Wars is not riding in my car.'" They shut up after that.
So what does Sara Taylor have to tell young people who might get sick like she did?
The question comes up at the naturopath's office, where people of varying ages are getting treatments like hers. "You want to be careful not to say 'You're 62 and you've got cancer, and I'm only 25.' It's hard at any age." One day after radiation, she's lying on the couch at home, clearly not well. Another day, she's out Christmas shopping, determined that no-one else will do it for her.
"I go home after radiation, and I can still feel the masses. I think: 'What if they were gone, what if they were just gone?'" A sigh follows that comment.
"Addressing your fear of death, even planning your funeral, is not saying you're going to die. By accepting the possibility, you can prolong life. I'm planning to have a future."
She admits to getting angry sometimes when out with friends, seeing healthy young people smoking while she, the life-long non-smoker, is the one with cancer.
"I mourned the loss of the sense that I would be alive forever, but you really do notice how beautiful spring is, and how the mountains in Vancouver are in winter, for those few, short minutes when the sun comes out."